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Diabetes and ITP treatements

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9 years 7 months ago #53305 by cindyfrye
Diabetes and ITP treatements was created by cindyfrye
Does anyone else have insulin dependent type 2 diabetes and doing ITP treatments ? .
Steroids mess up my blood sugars something awful. I was over 350 in the hospital for a bleed and my pump was empty with no way to refill it.

I was on the heart care floor not carb restricted diet so it was extra hard to plan meals. First meal was scrambled egg subs waffle with high fructose syrup. Hahah could ther be a less appropriate one?

Hoping to get "back to normal" soon. Steroids do a number on my appetite too.
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9 years 7 months ago #53309 by Rob16
Replied by Rob16 on topic Diabetes and ITP treatements
Cindy,

My understanding is that glucocorticoid steroids increase blood sugar levels by increasing insulin resistance. So, are you maxed out on your metformin?

Also, steroid use can deplete chromium levels, and supplemental chromium has been shown to help control steroid induced insulin resistance, as well as insulin resistance in general.

A call might be in order to the doctor who manages your diabetes.
The following user(s) said Thank You: poseymint
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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9 years 7 months ago #53310 by Sandi
Replied by Sandi on topic Diabetes and ITP treatements
I think they need to avoid the steroids for you. There are other ways to treat. It seems counter-productive to try to fix one problem but exacerbate another one in the process.
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9 years 7 months ago #53311 by cindyfrye
Replied by cindyfrye on topic Diabetes and ITP treatements
Hi Rob and Sandi,

Yes steroids do cause liver dumping of sugar in the system. Hemo and I discussed it prior to start of Pred. But at count of < 5 and no access to Nplate and IVIg failure there was not much choice. I only agreed to full dose 80 mg until we get Nplate results which can't come soon enough for me. So far so good. Recheck tomorrow.

I am not taking Metformin as my GI track can't handle the absorbsion. Using Humalog in an insulin pump.

Had diabetes doc adjust infusion rate already. Just can't use it in hospital. No way to refil reservoir.

Good advice much appreciated.

High counts to you all.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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9 years 7 months ago #53317 by Sandi
Replied by Sandi on topic Diabetes and ITP treatements
Well, you stumped me. That doesn't happen often! Hopefully you can avoid the steroids from now on because a sugar spike is not good! Do you respond to low dose at all?
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9 years 7 months ago #53319 by cindyfrye
Replied by cindyfrye on topic Diabetes and ITP treatements
Hi Sandi,

I didn't use it last time at all and the first time it was all I could do to survive the taper. Already back to 80 and no drops for five years.


Pred was used low dose for asthma and gout flair so I can take it but prefer not to.
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9 years 7 months ago #53363 by cindyfrye
Replied by cindyfrye on topic Diabetes and ITP treatements
So happy to have improvement after first dose of Nplate. Next one Monday.

My goal is to taper Pred ASAP. My diabetes numbers are as expected. HIGH. Lots more insulin use. But with pump no extra shots which is easier on the bleeding.

Bruises are starting to heal and that is a good sign.

Have insomnia bad and it's easy to get overwhelmed. Lots of short breaks between irritable frenzies of cooking, cleaning, shoping and unfortunately eating.
Surprisingly weight is fairly stable but that won't last if I keep this up.

I had the "Please pull the plug for me" talk with my brother and sister-in-law last night. It went well. I hate being so serious but as a single person whose dad passed and mom is not capable, it must be siblings and brother is closest physical distance-wise.

Still have very little consentration and no short term memory and since I think for a living doing Software support, I can't work. It is hard not to worry and I put off all I can but the financial issue will rear its ugly head eventually.

I am not sick from infections due to the Pred dampening the immune yet so I get out a little, carefully slowly but as of now sanely.

Been here done this before and hope with no suprises to get back to remission again.

This is crazy stuff and you never know when it will bite you again.

My heart goes out to those of you that are in constant treatment med mode.


Thanks so much for the advice and understanding. No one who hasn't fought this monster can do that. It GREATLY apprecited.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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9 years 7 months ago #53365 by Sandi
Replied by Sandi on topic Diabetes and ITP treatements
Cindy:

I don't think you need to worry about plugs just yet. This can be managed and you'll get there. Tapering Prednisone will help tremendously and you'll be back to normal soon. Hopefully, N-Plate will be the magic drug for you and you'll be able to avoid steroids from now on.
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9 years 7 months ago #53368 by cindyfrye
Replied by cindyfrye on topic Diabetes and ITP treatements
Thanks Sandi,

Just lots of time on my hands and list of stuff I've never gotten to.

Whenever you go into a medical facility they ask if you've got plans. It feels good to be done with it. Just needs registered and copies to family.

I am more concerned about my dogs than my "plug" any day.
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9 years 7 months ago #53376 by cindyfrye
Replied by cindyfrye on topic Diabetes and ITP treatements
:unsure:

Wow I am not sure I can keep this up.

Did you ever find yourself out of control, knowing you are way over the line but unable to stop.

It was like watching myself in a movie. A family was at the pool but the only adult was Dad. So 3 middle school girls were unaccompanied in the women's lockers.

I confronted them as under 14 requires accompanying parent.

I stayed an extra hour just watching until they finally dressed and went out to dad.

They told him of course. So then I asked if he would please use family lockers next time.

He complained to the front desk so I stood there and gave my side.

Front desk guy said first that family were members.

I said I knew that and did not mention non-member but Member lockers but as girls are too young he needs to be with them the mixed lockers is the right place.

Dad says there's men in there . But there are private changing rooms I said.

Can't tell how many times I said it is not safe

I think he wanted to call the police on me for molesting his kids.

Front desk guy doesn't know me. He was not happy to have this mess on his hands. I had called earlier to have towels brought in for the girls. So he knew it was happening.

It was like a train wreck I couldn't walk away.

It really irritates my last nerves but I can't walk away. That is the closest to panic I've been lately.

Maybe it is time to ask doc for something for the insomnia.
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9 years 7 months ago #53388 by cindyfrye
Replied by cindyfrye on topic Diabetes and ITP treatements
Well I have officially gotten to "The Lord of the Rings phase. Pred has me eating like a hobbit and looking like a dwarf, short and round. Gained five pounds in the last two weeks and was big before.

Sugar numbers climb after both meals and meds but come to normal between, thankfully.

Can't wait to taper Pred.

Am hearing a lot about Nplate treatments on going. I just assumed I would go off that too. When I reach safe stable counts. Wondering if that will happen or if this time I won't have a remission. Still hoping to go to just monitoring.
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9 years 7 months ago #53390 by cindyfrye
Replied by cindyfrye on topic Diabetes and ITP treatements
:laugh: I am so excited. PreNplate draw had me at 184. That is where I was in January before the collapse.

I get to cut my prednisone in half from 80 to 40.


Just feel like 1000 lb. weight lifted off me.

I know it is still closer to the beginning than to the end, but it is so wonderful.

Am hoping to have good retention and know the bottom of the taper is much slower. Am also aware setbacks happen.

But it feels so like getting my life back, I can't help it.
9 years 7 months ago - 9 years 7 months ago #53391 by
Replied by on topic Diabetes and ITP treatements
Your platelet count was 184,000 before Nplate - did you still receive Nplate (I know nothing about the treatment that's why I'm asking - also I am thinking with a count that high would Nplate be given).
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9 years 7 months ago #53392 by cindyfrye
Replied by cindyfrye on topic Diabetes and ITP treatements
My last Cbc in Jan was 186 then it crashed to 7 in Feb. I had Nplate last week and was pleased to have 39 . Also on 80 mg Pred.

Today the count was before the Nplate injection and I am back to previous normal. And yes had the injection.

We plan three more and other than cutting the Pred down from 80 to 40 just trying to hold.

I had a 10 year remission between ITP. Last incident was Apr 2006 and used Retuxin and no Pred.

So just starting this session but having great results so far.
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9 years 7 months ago #53398 by cindyfrye
Replied by cindyfrye on topic Diabetes and ITP treatements
:blink: feeling fuzzy. I actually slept almost 5 hours. Hoping to lose the insomnia on lower dose Pred.

Had a lot on my schedule yesterday. At my haircut I found out the salon had been robbed by employee. How terrible. So salon promoting is my new hobby. Don't want to lose my hairdresser.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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9 years 7 months ago #53399 by Sandi
Replied by Sandi on topic Diabetes and ITP treatements
Cindy. This is how I see it. You need to get off of Prednisone. As soon as possible. Doing that and monitoring could lead to a drop. For most people, monitoring or dropping is not a huge deal, but it could be for you since you should avoid steroids. Unfortunately, steroids are easily available but N-Plate is not. You need to use it while you can and try to get stable. Remissions happen with N-Plate and you could get there in a few months. Don't worry about remission yet, think about getting off of Prednisone asap and maintaining counts, ok?
9 years 7 months ago #53401 by
Replied by on topic Diabetes and ITP treatements
I misunderstood - thought your count was 184k before your Nplate yesterday as it had been in January.

Good luck with the decreases in prednisone and getting off it!
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9 years 6 months ago #53515 by cindyfrye
Replied by cindyfrye on topic Diabetes and ITP treatements
Had three days of low blood sugar in mornings. had to take rescue glucose.

Diabetes doc was able to help me adjust my insulin pump.

Checking more frequently now. Still eating and gaining weight like crazy on the pred.

Hoping for another good count and taper of pred in the morning.


Except for a couple of near panics when in crowded shoping area I am doing better at the emotional rollercoaster. I have started therapy and will be doing some Mindfullness classes. Hoping for more stress relief and less pred.

Am able to get out of the house a bit and that helps.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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9 years 6 months ago #53521 by Sandi
Replied by Sandi on topic Diabetes and ITP treatements
One day at a time. Seems like things are slowly getting better.
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9 years 6 months ago #53523 by cindyfrye
Replied by cindyfrye on topic Diabetes and ITP treatements
Yes they are getting better. Count today is 247. Pred reduced from 40 to 20. I am very happy.
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9 years 6 months ago #53694 by cindyfrye
Replied by cindyfrye on topic Diabetes and ITP treatements
It has been a busy week, but good. Count was 267 Monday, am down to 10mg of prednisone. Goal is to be off of it next week. So I made an executive decision to drop to 5mg today tbru Saturday and none on Sunday.

Will see how counts are Monday. I need to start back to work at the end of the month and I have to sleep to do it.

My blood sugar is still a bit off. High in the day and low at night when the prednisone is worn off too. So lots of adjustments.

So much weight gain in the month I have been treating. Wish I could take it ofv as fast but know I won't.

Trying to choose better foods when I do eat. It is a struggle.


:laugh:
  • Sandi
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9 years 6 months ago #53697 by Sandi
Replied by Sandi on topic Diabetes and ITP treatements
Cindy:

The toughest part of the taper is when you get below 10 mg's. Since your body makes roughly 7.5 mg's of cortisol per day, your adrenals need to be able to pick up the slack. You should stick with 5 mg's for a while instead of rushing. You might get hit with withdrawal if you don't take it easy. It's a low enough dose that you should be able to sleep.
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9 years 6 months ago #53700 by cindyfrye
Replied by cindyfrye on topic Diabetes and ITP treatements
I have lots of pills and a cutter. Will see how it goes.

Thanks for the advice.
  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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9 years 6 months ago #53702 by mrsb04
Replied by mrsb04 on topic Diabetes and ITP treatements
Cindy: Don't come off it too quickly , withdrawal is awful enough and coming off too quickly can be dangerous
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9 years 6 months ago #53858 by cindyfrye
Replied by cindyfrye on topic Diabetes and ITP treatements
Wow first week off prednisone. I was so tired and could barely get out of bed. Had two doc apts. GP to get cream for nasty heat rash. Diabetes doc to reset my insulin pump after getting off the steroids.

Good news is I had A1C of 6.0 which means my sugar was under good control even with the ITP meds.


Still fighting with pharmacy to get Nplate. They gave same hassle on the refil as the original fill. It finally came but not in time for weekly shot so office decided to go with a skip week.

Will test and do treatment Wednesday next if numbers show it is needed.

Had 326 this week with no Pred.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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9 years 6 months ago #53859 by Sandi
Replied by Sandi on topic Diabetes and ITP treatements
So far so good! Glad it's all working out.
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9 years 6 months ago #53890 by cindyfrye
Replied by cindyfrye on topic Diabetes and ITP treatements
Thanks, Sandi.

I went for a blood draw today. It is still holding at 224. So no Nplate this week either. That makes the second skip of a treatment.

I am really tired though as Monday I drove 100 miles to take my dog to university hospital for surgery consult and stayed overnight. They did the surgery yesterday. I got home at 6pm. It was a long couple of days.

He is in for post-surgery observation. Have to drive back and get him. Hopefully Friday.

Unpacking and resting today.

Start back to work part time next week.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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9 years 6 months ago #53896 by Sandi
Replied by Sandi on topic Diabetes and ITP treatements
Counts are looking good! Sorry about your dog - I hope he is okay.
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9 years 5 months ago #53998 by cindyfrye
Replied by cindyfrye on topic Diabetes and ITP treatements
Thanks Sandi. The dog is doing well his numbers are pretty stable too.

No Nplate again this week. Monday I was at 209.

Two days of back to work full time. I feel like I have been run over by a truck. Sore all over from too much sitting.

Just mostly trying to not take home any germs.